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  • Just thought I would chime for a minute about Esbriet, I have been on it for about 10 months now. Only side effect I have experienced is weight loss and then appetite loss recently. When going to the Doctor for a check up he said to try and cut back too 6 tablets instead of 9 per day (267mg each). When I cut back my appetite returned right away.  I told him I didn’t think it was working or not ?, his reply was how do you for sure ? you are are still aren’t you ? LOL. I have had this for about 8 years now or close.

  • Dale Darling

    June 12, 2019 at 7:54 pm in reply to: Tips for Carrying Multiple Items as a Patient with PF.

    I find a little comfort in carrying a can called BOOST Oxygen when I use my POC which only goes to 5L Liter when I am walking to much. My Doctor says I need 6L and 8L if exercising. It not a cure, but it is 95 percent pure oxygen that a lot of pilots and athletic people use if then need quick blast of oxygen too help them. I have been caught outside in the colder temps and almost passed out and when I went to inhale my lungs didn’t take air in, and that is damn terrifying and scary. It can be purchased on eBay site or maybe other places on the Web. It’s available in three different sizes, but it is not refillable, but disposable can. Price is anywhere from $10.75 to about $14.75 depending on the can size. I believe the larger can will provide a person with about 200 one second shots of oxygen. Does is help ? I don’t know, but it does give a little more confidence to me to get out of my chair and go do something.   Dale Darling

  • I’m still working, I have had PF for at least 5 1/2 years. My job is where I can set down at a desk quite a bit when needed. I have gotten a little worse over the last 6 mo. and have a oxygen concentrator at home I use in most evening now. But what I wanted to add was that I sleep with the concentrator and usually sleep pretty well most of the time though. My wife says I stop breathing at times and you guessed it, she got me set up for a sleep study next week, can’t wait for that to happen. Anyway, I have gotten use too sleeping with oxygen at night and feel pretty rested since I do. Age 72